So I saw a new consultant a few weeks ago he is the head of his department and he has decided that I am on step 5 asthma treatment and wants to do more tests to look for other conditions, so in other words he thinks I am being over treated, even though it was his consultants that put me on all these meds.
He also put in my letter that he will be referring me to the royal brompton if I keep having flare ups, even though I explained to him that most of them were caused by frequent chest infections.
So I am going to try and get my doc to refer me to UCLH, does anyone else been here?
Lejaya
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lejaya
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Hi..... I've been at the Brompton for the last two years after referral from my local hospital resp consultant ..... I must say the Brompton is very good...
the reason I don't want to go to the Brompton is because I've heard they only like classic allergic asthma and are not so good with the atypical asthma which I have
my asthma is mostly triggered by infection so no allergies or hayfever etc
and also I read on their website you have to be admitted for around 4 days for their difficult asthma protocol which I cannot do as I'm currently on report at work atm for my sick days.
I wouldn't go by what you've heard, & you don't have to go in for diagnostic tests if you don't want to. This is the guy I mentioned rbht.nhs.uk/healthprofessio... but if you look at the asthma page you'll see there are 6 asthma consultants each with different asthma specialties. Don't want to nag you lejaya! but the treatment there is first class & ALL the staff e.g. pharmacists, physios etc are trained in respiratory illness. I've been to UCL too, years ago now, & it was good, but nowhere near the standard of care, research etc you get at RBH. Good luck with whatever you decide x
Yes ..... they normally like you to stay in for a few nights to run a series of tests !! I stayed in for two nights !!
I was border line allergic asthma and went on a xolair trial, must say it has helped me lots but I'm still on a maintenance of pred 25 mg daily for two years !! I also have sinus issues and copd ...... I'm on 18 different tablets and 4 inhalers ..... but I've been stable for 11 months which is incredible for me.... after many admissions to hospital prior to the Brompton !!!
The care is 1st class there, the whole team are specialists in respotory care from consultants to nurses .......
I'd grab the chance of RBH if I were you lejaya. Why go to UCL when one of the best chest hospitals in the world is on your doorstep? There's a "difficult asthma" specialist called Andrew Menzies-Gow there who's excellent.
Thanks for your replys, I'm just a bit worried about going to the brompton as I don't have classic allergic asthma and I they treated one of my close friends so badly and I know that shouldn't effect my decision but I'm also worried about being fobbed off and everything being blamed on bronchiectasis as per normal.
also I dont really think there is much they can do for me although I would like to try a long term antibiotic
I was referred to the Royal Brompton after constant admissions to hosp normally going straight into resuss. I was in hosp from January to June on and off for a week each time always triggered by colds which rapidly went to my chest and led to severe asthma with 48hrs.
I spent 4 or 5, days as an inpatient at the Brompton while they carried out tests and diagnosis.
They reviewed my medication and I was offered a xolair trial
My life was turned around and I have not been in resuss in 2 years. I have had to go to hosp for nebs and the Brompton kept me in overnight once but my asthma is now really well controlled compared to how I was in 2014.
Please take up the offer to be referred to the Brompton you may be as lucky as me and get your life back - I cannot praise them highly enough - that's from the consultants, nurses to support staff.
Although you may be quite right about the cause of your flare ups being from chest infections, your consultant needs to find out why you are so vulnerable to them. He doesn't think you are being 'over-treated' - he thinks there may be a different underlying cause to your problems and wants to find out what it is. However, in my experience, consultants have a rotten bedside manner and it is often the nurse who works with the consultant who can explain it all to you in a more thoughtful way.
I can see why you feel so fed up about all this, as you seem to be getting nowhere, but these people really do know what they are talking about, so you have to trust them. No-one has a miracle cure, I'm afraid.
Wherever you go, much of medicine is about trying something to see if it works and trying another route if it doesn't. As others have said here, the UK has some of the best doctors and treatments in the world, so if you are offered the chance to go the the Brompton, then go.
thanks for your reply I'm just frustrated because all the other cons I have seen have been really sweet and helpful and they have also ordered different tests so I already know I have other medical conditions including reflux and bronchiectasis so I know why I get so many infections
but this new cons wrote quite a nasty letter to my doc telling me not to increase symbicort when worse no more tapering pred which were both really helping me
he put how I'm on step 5 treatment but still getting flare ups etc and he wants to do more tests but I already know I have other conditions so does he is assume
so in that way not really sure what the Brompton can do for me anyway
I thought exactly the same but nothing ventured/nothing gained Lejaya ... I live 50miles from the Brompton and have to go there once a month by train !!
But they have managed to stabilise me and I'm now living a relatively normal life after 10 infections in 12 months..... 2yrs ago and visiting A/E many times !!
I'd go with the flow, you don't know until you've tried !!
Don't know if it will help you in your decision making at all, but I've recently come across a bang up to date extremely informative web article on Bronchiectasis, that's significantly more comprehensive than anything else I've ever read on the subject (and I'm a heavy researcher). The info contained may sway your decision as to what additional help may be possible via whatever Hospital you choose. Good Luck,
PS On the subject of 'Asthma' I've concluded the term is practically obsolete and should be substituted by the more generic 'Respiratory Illness'. I say this because NICE have been trying since 2015 to agree a definition for Asthma and still don't seem to have made their mind up.
I know it's hard I too have an atypical type of asthma with allergic features ( fun) I too was referred to a local tertiary centre when staff in local team changed. It was great to get a senior second opinion and although I got no new treatment it did reassure we were doing what we could. I have also had contact with them when they become aware of new/ changed treatments that might help.
I'd go for it. Also asthma is a disability under DDA so I'd ask work what they are doing to help you- reasonable adjustments? Are you in a union? I got time off to go for referral/ admission as a solution would be beneficial to all.
thanks for all the replys, I'm glad you have all had good experiences with the Brompton and I think it would be good be try a specialist hospital as I don't think Kingston have much interest in asthma and bronchiectasis.
I just need to get over my fear of being fobbed off as it has happened before
Just wanted to second what QuietChest said in reference to your warning at work - I went through something similar with my (now ex) employer making a fuss about time off with asthma. If you have asthma you can tell your employer you consider it should be classed under the Equality Act (which superseded the DDA) - if you have asthma that has a long-term substantive impact on your life as yours obviously does, this should give you some extra protection at work as many employers still class asthma absences in the same way they do if someone has a few days off with a cold or a stomach bug, which really is unfair as it's not the same thing. You can ask for your asthma absences to be classed as 'reasonable adjustments' as part of keeping you at work, see more here:
I've been to the Royal Brompton and they weren't much help to be honest. The consultant said I'm on maximum treatment Possible and they couldn't do anything else. They wanted to keep me in for 4 days for the protocall but I was at university at the time and couldn't attend due to exams. I'm now under the Brittle asthma unit in Birmingham at heartlands hospital. Consultant there is very good and I'm looked after by my local gps, local hospital and the Brompton once a year. I have type 1 atopic Brittle asthma and I'm allergic to so many things which is why they've put me in xolair and I've seen a massive improvement. But like you I also suffer from very poor immunity and have frequent bouts of tonsillitis, Quincy and chest infections so they are trialling me on a new drug that's come out this year to reduce the white cell blood count to reduce infection that makes my asthma flare up. Give everyone a shot - it took me 3 years and two intubations to finally get any help so take advantage of it and see everyone you can.
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Post consultant appointment blues
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